Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

AndreaB Contributor

Off topic.......I'll be gone this weekend so don't talk too much. :lol: I might go through computer withdrawals. :lol:

Leaving tomorrow morning. Not sure what time I'll be back on Sunday, probably afternoon sometime though. Don't know what I'll look like when I get back.......I'm being run all over town and getting a makeover.......my friend mentioned bringing flip flops so I don't ruin my toes though, :P Also going to dinner at a place that says they can handle gluten free. :)

You all be thinking of Mitch being left with the three kids for the weekend. Poor hubby. He's so excited for me to get away though.....much needed break.

What you all have said about food restrictions makes sense. I'm assuming more for those who are severly limited if they restrict reactive foods? They only thing we avoid is gluten (of course) and soy (cept for soy oil occasionaly and soy lecithin). I'm only really concerned about gluten eating out though, unless something says it has soy in it.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
confused Community Regular

Andrea,

That sonds like so much fun. Are you going to post before and after pics. Im not sure hubby could handle all 5 kids with me gone overnight.

rachel,

I have been thinking about what you said about the food. I feel you are completely right. I think I am sometimes worse off cause im not eating everything like i was 2 years ago. I know im lacking calcium and other nutrients.

I also think when we give up a food for a long period of time (nomatter gluten, casein, soy, beans or what not), when we add it back to our diet, out bodies freak out. They feel like we are trying to poison them, and we react. I also think we tense up when we add a new food back in and our anxiety kicks in when we try that food again.

paula

CarlaB Enthusiast

Andrea, have a WONDERFUL time!! And, no conservative nail colors!!!!! I'm sure I speak for Donna in this, too .... you need to get a fun, wild color that you like .... and beige does not qualify! ;):lol:

And, yeah, pictures are a must. :)

I am feeling horrible. I feel like I have the flu. I've been reading a lot about Lyme and mold toxins and learned that they cause cytokines, as we have talked about before. I think that's part of the reason I have felt better on abx as I believe abx have anti-inflammatory properties.

I've been on pain killers all day. I am having Adam stop at Whole Foods on his way back home (out of town again) and buy me some curcumin. It's supposed to be as effective an anti-inflammatory as corticosteroids. Hopefully it will give me some relief.

Cholestyramine makes the inflammation worse in Lyme patients, and that is what I'm experiencing. I didn't take it today, and don't think I will take it anymore.

I read an article that peach tree extract (must buy online) is good for mold detox. If I weren't going to Germany in two weeks I'd order some. That might work for some of you. :)

CarlaB Enthusiast

From Kassandra:

I'm out of surgery and all went well. It turns out I have no narcotic pain receptors bcuz after trying IV morphine, IV darcovet AND IV fentanyl and I was still screaming in pain, they tried another IV non narcotic med and I finally was able to stop being in horrific pain.

Just wanted to update everyone!! :)

mftnchn Explorer

Good news, Carla, glad this is much better.

Andrea, how exciting! Both times with friends, and the makeover...I will want to see pictures! And you have Donna's EM to play with too.

Hoping for word about Kassandra...

I feel much worse today (fatigue/foggy/asthma) and hope the ecoffee helps. Put on a mosquito repeller (tablet on an electric thing) different than the odorless liquid we usually use. I starting really reacting--crazy how some stuff like that is deathly and others are fine.

However, the good news is that yesterday I think I resolved the almond problem and the almond grinding problem!!

CarlaB Enthusiast

Oh, heard more from Kassandra, she does NOT need a second surgery! No stone in the bile duct!! YAY!

confused Community Regular

Carla.

Thanks for the updates on kassandra. Im glad things are goign well for her. Too bad we all couldnt go surprise her in the hospital lol.

Ok I really stink the last few days. No matter how much i deodrant it and bathe, i still stink. I reallly hate this.

paula


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AndreaB Contributor
Andrea, how exciting! Both times with friends, and the makeover...I will want to see pictures! And you have Donna's EM to play with too.

However, the good news is that yesterday I think I resolved the almond problem and the almond grinding problem!!

I'm taking the EM makeup with me.....thanks Donna. :)

Glad you got the almond situation solved.

Hope you feel better by tomorrow. :)

Oh, heard more from Kassandra, she does NOT need a second surgery! No stone in the bile duct!! YAY!

Yay! Good news. That's scary about the pain meds. :ph34r:

AndreaB Contributor

Paula,

Hang in there! It will get better. :)

aprilh Apprentice
April I'd check and see if extra detox helps the symptoms. That may give a clue that is is toxin related.

True. Detox always helped me.

So, by that you mean ramp up on chlorella, activated charcoal, and zeolite?

I can try that.....plus I need to do a detox bath. I ordered some magnesium chloride flakes.

Today it seemed a bit better. Last night I took adrenal support, magnesium, and enzymes that fight inflammation.

I *think* the massage stirred up toxins and stressed the adrenals. I got flank pain a few times recently which is usually a sign my adrenals are stressed. Sheesh! Always something!

Rachel--24 Collaborator

YAY for the weekend finally getting here! :D

I need some rest...and I can finally catch up on the posts (again). :)

Kassandra, great news about the surgery going well. Thanks for the update.....and I'm really glad you didnt need another surgery! Hope you'll be able to post soon. :)

Andrea.....this is really AWESOME!! I'm so glad you're having this mini-get-a-way. :D

Enjoy it!!! You've definately earned a little time to pamper yourself. :)

I'll be praying for Mitch. :lol:

CarlaB Enthusiast
So, by that you mean ramp up on chlorella, activated charcoal, and zeolite?

I got great relief from coffee enemas, more than anything, that made it clear it was a toxin problem.

Chlorella, charcoal, zeolite, light exercise, sleep, etc. Anything that helps to detox.

Kassandra is on morphine but is still in a lot of pain, so keep her in your prayers everyone. She's one tough cookie.

Rachel--24 Collaborator
Kassandra is on morphine but is still in a lot of pain, so keep her in your prayers everyone. She's one tough cookie.

Awww.....I hope she feels alot better tomorrow. Yup....she is a really tough cookie....for sure! Tell her she's in my prayers. :)

mftnchn Explorer
So, by that you mean ramp up on chlorella, activated charcoal, and zeolite?

I can try that.....plus I need to do a detox bath. I ordered some magnesium chloride flakes.

Today it seemed a bit better. Last night I took adrenal support, magnesium, and enzymes that fight inflammation.

I *think* the massage stirred up toxins and stressed the adrenals. I got flank pain a few times recently which is usually a sign my adrenals are stressed. Sheesh! Always something!

Massage will overwhelm me with toxins too, especially if I do it twice in close proximity.

Carla, I am with you on ecoffee helping far more than anything else; not that the other doesn't help--I do it too!

mftnchn Explorer

Wonderful news about Kassandra, I was really worried about her needing such an invasive procedure. Hope the pain and inflammation now subsides quickly and no further reactions to meds and stuff.

Sherry

AndreaB Contributor
Kassandra is on morphine but is still in a lot of pain, so keep her in your prayers everyone. She's one tough cookie.

Yes she is and I will. :)

mftnchn Explorer

Me too. :)

nora-n Rookie

Good the gal stone procedure is over and went well, and I am sorry she was in such pain and the pain meds did not take. Some people have different receptors/cytochrome issues etc, there are some for example on whom some pain meds just do not work.

About inflammation, I experienced relief from back pain and shoulder pain from inflammation from LDN. Or, it could have been a combo, that the cortiosl from the adrenals stretched further, as cortisol is very anti-inflammatory too. When the immune system gets normalized from increasing the body's endorphins and metenkefalins, less cortiosol is needed, and it gues further, reducing inflammation. Just a theory to what happened to me.

I sometimes need to use a little hycrocortione cream, like on an arm or leg (yes, it all gets absorbed) , like after travelling or other things that use much cortisol. Otherwise I get the low cortisol headaches, brain fog(much better now) and salt cravings. Getting glutened with even tiny amounts is very stressful too. I eat everything else besides gluten and milk, so I think I get the things i need.

I often wake up towards the morning, I think it is from being on the low side re. thyroid meds. Really annoying.

nora

aprilh Apprentice
Good the gal stone procedure is over and went well, and I am sorry she was in such pain and the pain meds did not take. Some people have different receptors/cytochrome issues etc, there are some for example on whom some pain meds just do not work.

Nora,

What's LDN?

aprilh Apprentice

Glad Kassandra is doing a bit better.....

I am so glad the weekend is here. This has been a tough week!

Andrea, Have fun on your kid-free weekend! We all need those sometimes.

Tonight I woke up with the worst leg cramp. Then I almost passed out! :o Leg cramp woke me from a dead sleep and I jumped up out of the bed so fast. Then I got real dizzy and almost passed out!

The wierd thing was that my calf was cramping, then the front of the same leg started cramping. So, It didn't matter which way I stretched it out - it just kept cramping and it wouldn't stop. I couldn't walk or anything. I haven't ever had it happen that way before.

I figure maybe I am dehydrated or something so I got up - finally after laying back down to avoid passing out :o - I made some cal/mag fizz since it has lots of trace minerals and potassium along with the calcium and magnesium.

It's the middle of the night and I am up drinking this slowly. I do NOT want that to happen again!

mftnchn Explorer

April, I had that happen quite often for a period of time. It was horrible. I think you were doing the right thing to take the cal/mag.

Something weird but that helped me was putting a bar of soap in the bed under the sheet near my feet. No one seems to know why this works but I wonder if it has to do with the electric charge or something.

The other thing was sipping tonic water. But I bet your cal/mag would do the trick for that too. Maybe an epsom salts bath if nothing else before bed might work.

This has all stopped for me, so is no longer an issue. It stopped pretty much after putting the soap in my bed. It has been there for a couple of years, LOL. I took it out just today and figure I no longer need it. We'll see. :)

Jestgar Rising Star
Something weird but that helped me was putting a bar of soap in the bed under the sheet near my feet. No one seems to know why this works but I wonder if it has to do with the electric charge or something.

OK, this is really weird. Is it a specific kind of soap? Natural? Unperfumed? I read once that not having tightly tucked sheets helps, so was it a big bar? Maybe it gives you more room so your toes don't point?

mftnchn Explorer

Well I laughed out loud when I read it but read it repeatedly on the net. There is one type of soap that doesn't work according to many but can't remember which brand. I finally decided couldn't hurt to try, and it seemed to help significantly. I've only rarely had a spell since, and not as severe. I am sure it wasn't giving my toes more room--putting my toes outside the covers made no difference.

CarlaB Enthusiast

The tumeric/curcumin Adam bought me last night seems to help with the inflammation. I didn't need a third pain killer yesterday. We'll see how it does today.

Nora, is that cream cortisol? I've never heard of it. It's not like hydrocortisone is it? I can't take anything with a steroid.

I have heard of the soap thing many times, LOL. Doesn't it help with RLS?

April, sounds like you had a charlie horse. My husband used to get those, I don't know what stopped them. The reaction to jumping out of bed too fast sounds normal. :)

aprilh Apprentice
April, I had that happen quite often for a period of time. It was horrible. I think you were doing the right thing to take the cal/mag.

Something weird but that helped me was putting a bar of soap in the bed under the sheet near my feet. No one seems to know why this works but I wonder if it has to do with the electric charge or something.

The other thing was sipping tonic water. But I bet your cal/mag would do the trick for that too. Maybe an epsom salts bath if nothing else before bed might work.

This has all stopped for me, so is no longer an issue. It stopped pretty much after putting the soap in my bed. It has been there for a couple of years, LOL. I took it out just today and figure I no longer need it. We'll see. :)

Sherry,

I have actually heard of that before. My co-worker runs marathons and constantly gets leg cramps. She says the soap has helped her more than anything. She also drinks the tonic water.

I felt a little better after the cal/mag. I think I went all week without drinking enough water. Then last night I had a glass of wine. i think that finished dehydrating me.....So, today my goal is to work on REHYDRATING!!!

Today is the convention....I think I am going to have to take my 2 kids by myself.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.